New here Dad just dx with PSP :(

Hi I'm new here. Dad just dx with PCP a couple weeks ago, but he's shown symptoms for years. His family doctor thought it was Parkinson's, sent him to a neurologist over a year ago, but he was a terrible doctor and sent Daddy home with no resolution. Recently he saw another neurologist who did the eye test and when Daddy couldn't look up, within 20 min's said he thought it was PSP. Daddy's main symptom is he falls backwards and he doesn't catch himself which causes him to land on his head and he's 6 feet tall so that's a big drop to land on one's head! In retrospect I see other signs (of PSP) I'd mistakenly written off as him getting older. He's 79. His wife is his primary caretaker but she works fulltime. She usually has a family member sit with him when she's at work 8 hours a day, who live a couple blocks from them. I live an hour away and have been making it a point to visit at least once a wk for the last few months after he was hospitalized due to a severe fall. It's so sad. Bless his heart, literally and figuratively as he had a pacemaker put in while in hospital recently. His mind is still intact for the most part. He has occasional tremor in one hand. He gulps his food unlike before PSP. He's not nearly as smart but he can keep up in a conversation and has plenty memories from long ago. He laughs at the right times etc. I hope his symptoms don't increase quickly.. or ever of course but.. this could get so sad and hard. I have a brother and a sister, both of whom contacted him a few times a year prior to the PSP symptoms getting so bad, but now, they say "it's too hard" on THEM!!!!! My poor Dad. He was always my rock, a strong and honorable man. To anyone who's read all the way to this ending.. THANK YOU! And please know I pray for us all. ~S

16 Replies

  • Hi S, I read to the end and I also pray for us all. I'm sorry yet another person has cause to join this site but we welcome you. It has helped me so much as I care for my husband with PSP and it is good to be able to "talk" to folk who know how I feel and understand what we are all going through. Do your brother and sister know that your dad is the same man on the inside and understands everything? I wonder how they would feel if family avoided them if they were in the same position. It is hard but for your dad's sake I hope they stop thinking about themselves. A friend of long standing came to visit yesterday. We communicate via phone, email etc but it was the first time she had seen my husband for about 4 months. She broke down in tears, not in front of him thank goodness but it didn't do me much good having to console her. I have to say I didn't actually do much consoling. I told her it wouldn't do either me or my husband any good if I was in tears all the time and he would rather see me cheerful and "normal" than an emotional wreck. I do still have down times of course but they don't solve anything and I try to keep them to myself.

    I pray you will stay strong on the bumpy road ahead and I know your dad will appreciate your visits.

    Nanna B

  • Hi This is kolton I had trouble getting fixed up on the sit e Now I will talk it is such an emotional roller coaster To be on . My husband s doctor still hasn't given him the psp diagnosis but I no that's what it is 7 or more yrs of it already Hope we can chat Take care

  • Hi Kolton and what a pretty name although it might be made-up just for a username but anyway. I'm sorry for what you're going through. I knew too, weeks before the correct diagnosis, figured it out because a new symptom manifested, that being his inability to look upwards. When I found the symptoms of PSP (online) I knew. At first I thought it was Lewy Body but PSP makes it's victim more likely to fall BACKwards and oh my! That was the nail on the head. I'd read some then cry some and read some then cry some. You and me are both new here right? And like your husband, my Dad has been having symptoms, mostly in the form of backwards falls, for several years. At first I wished he'd been correctly dx much sooner but, since there are no meds to help stall the disease, no cure, it's kind of good nobody knew for so long. What do you think about not knowing for years?Please keep us updated ok?

  • NannaB thank you. When I compare your friend to my siblings, and when I imagine my sibs going for months and months without contacting our Dad, then when they finally DO, they'll be all weepy, like your friend. It'll be VERY hard for me to have empathy for them for the sole reason they didn't have empathy for their own father when he needs them the most. It's kind for friends to visit but honey, if they care enough to cry, because it's "PROGRESSIVE" SP, they better make more frequent visits or prepare to cry again. It was nice of you to try to be empathetic to your friend even though I'm sure it wasn't easy. There's something wrong when the victims have to do the comforting you know? (Is victim the right word? Does that make loved ones / caretakers.. second-hand victims? OR maybe victim-survivors?)

    I've been clear to both sibs that Daddy is still in his "right mind" but they still insist it's too hard to see him suffer. I guess they're more empathetic than me since they can't stand to see it and I apparently CAN since I most certainly DO.. that was extreme sarcasm sorry I couldn't help it haha! I'm trying to avoid asking the sibs again, or talking to them at all which is easy because we don't live close, I won't beg but it breaks my heart that they'd DARE to break his heart at this time.

    I mean, I think of how Daddy must feel, now that he knows the name of his condition. When my Mama was 34 and I was 16, Daddy was 39, she died of very aggressive misdiagnosed cancer. It took me a cpl YEARS to realize as hard/impossible as it was for me and all her family, to say goodbye to her, SHE had to say goodbye to ALL of us, including all 3 kids under age 18. Now, 30-some years later, and Daddy still mentally sound, he's had 23 yrs of happy living since Mama died. My point is, I do wonder.. has he cried? Can he and has he, researched? Has he wondered as do I, why both he and my mom were ripped off in that they'll both have died from things that have odds of like, 1 to 100,000 for PSP, and probably equally low odds for my mom at her age. I learned with Mama that if you ARE the one out of a million the odds matter little to you.

    I'm just rambling NannaB. I tend to do that.. let's hope I don't ever get dementia since I'm already naturally half loopy haha! I thank you for 'listening'. I'm sorry you know the same monster (PSP) and I hope and pray your dear husband and you are having a good wkend. God bless you for being strong for your husband. I fully agree they don't need to have to deal with OUR tears when they have way too much on their plate already. Thank you again.

  • NannaB my reply to you showed up under Kolton's reply to me. It's long so get comfy haha!

  • I know it's hard. I've watched my husband slowly deteriorate over the last two years after being diagnosed with CBD, which is similar to PSP. It's hard for them knowing what is going on and not being able to stop the progression of these diseases. It's hard on those of us who care for them as we watch helplessly. Give him comfort when needed, and space when he asks. Assist him to keep him safe but also allow him to do things for himself as long as he can.

    I don't post on here often but I do readand have learned that even though it feels like it at times, we are not alone in this battle . Praying for strength for you and your family. Also praying that even though its hard for them, that your brother and sister will realize that not seeing or talking to your dad will be harder on him.

  • Thank you for that thoughtful advice VSM. Please read my reply in this thread, to NannaB, so I don't repeat myself since what you said here about how hard it is on them makes me want to say to you what I already wrote to NannaB. And yes, my sibs are being selfish and making it harder on our dad. They should know that but what they don't know is what they're doing will also make it much harder on their own selves too, since in the end, they'll have all that GUILT combined with grief to deal with!! They should be so ashamed! And if they'd come all unglued in front of Daddy.. then it may be better for them to just continue to stay away.

  • Why did. The doc change it to. Psp?????

  • Kolton, you asked why the doc changed the diagnosis. It was a different doc. The first one a year ago, a neurologist, told Daddy to walk up and down the hallway and because that day, Daddy was able to do that, despite the fact that the doc was told Daddy fell over backwards OFTEN, doc said go home and dismissed the situation. The 2nd neurologist made the estimated diagnosis within 20 minutes, mainly due to the type of falls, backwards falls onto his head, as if he doesn't react quick enough to break his fall, AND he asked Daddy to keep his head still while looking up and he can't look upwards very far. The doc's dx was tentative but I already knew from research a couple weeks earlier when I learned about Daddy's inability to look (vertically) upwards. That's a rare symptom and really distinguishes PSP from a lot of other things like Parkinson's.

  • Hi s... Will surely pray for you. My dad is 73 and now has psp for almost 5 years... I too hope that the progression is not there or is very slow...... Strength to you and your mum. To avoid falls while sitting what we did is simply fix a plank of wood across the chair's arm with a lock so that dad wouldn't get up unattended and suddenly. He has a tendency to get suddenly... Take Care and love

  • Thank you for sharing MSOMAYA. I'm very sorry about your dad. My dad is still able to walk but he falls so often. How much walking does your dad do now if any? Was he diagnosed soon after he began to have symptoms? It's my opinion that my Dad needs to use a motorized scooter but I'm not 100% sure he can handle one or how fast they can go or how easily they fall over. I even found a walker that has the seat in the back so if he fell backwards would he fall into the seat and sit or what? I'm just not sure and wish the doctor would hurry and inform us about what to do! Maybe he needs to skip the scooter and go straight to a wheelchair and if so, I can visualize him doing as you said, getting up suddenly and without a second thought. Also is the board you use wide enough they can use it to set things on? Hugs to you, and prayers for you and your family.

  • Dad was diagnosed in February 2010 after he had a fatal fall. But I distinctly remember he had a fall once in October 2009 and that he had balance issues then itself. So mostly likely this disease must have started earlier. He literally can't walk. He walks with crossed steps but we have a full time ward boy and maid to look after him. The only reason we make him walk twice a day from bed room to living room is to avoid bed sores. It has been our conscious decision to avoid a wheelchair for him because his body is so rigid now that to make him sit in a wheelchair is a task in itself. He literally lies straight and after 5 minutes of pushing he manages to sit. For some reason my dad has never managed to communicate. He was very stubborn and never tried. So I am not sure if his condition is like this due to lack of. trying or that he is also affected with dementia. I do read other. posts where psp patients communicate their thoughts. With my dad it's difficult to gauge. But with every patient it's different so I truly hope and pray the same thing doesn't happen to most other patients.

    For w while my dad use walkers but one person was always around him. We are from India so having full time help though expensive it is not impossible. I am just glad we can afford it else it would not be possible to take care of him like this.

    And yes the plank on the chair is around 10 cms wide.

    If you have more questions please feel free to ask. Take care!! Hugs

  • Hi dear 'maya. I'm tucking this idea of the wheelchair shelf, into my cap for possible later use. I'm sorry your Dad isn't communicative and his condition sounds very difficult, like needing so much time to be able to just sit. We as people, sure take so much for granted don't we? Like sitting, and like, having my father alive and well, as he's been most every day of my life. Here's to wishing a great day or at least a much better day today for you and your Dad!! Thanks so much for sharing! Hugs to you!

  • hi all

    i have ajUSTEP WALKER for

    In the house but really need a wheelchair to stop my falling over so much -most of my falls are in the house as i turn right every time i fall and many times a day too

    I nmow juse a wheelchair for outside to make it safer 4 anyone tkaign me a s they do not fall with me - I was taking them o ver with em when i fell

    i go tdzd in ded2010 and am still here upright most of the time apart fm when i am flat on my face or my back

    welcome to the site

    `ar euou in tghe UK: I am and am a psp person

    lol jIll-)

  • I am sorry to hear that you are going through this. I discovered my dad had psp after taking him to an eye doctor and during that visit i discovered his eyes didnt rotate. He also had the falls. Once i went home i Google all the symptoms and came across this horrible disease. His follow up was with a neuro ophthalmologist were i shared my findings. At first he laughed at me but within 2 min of checking him he turned and said i may be on to something.

    For a long time no one could figure out what he had. As usual the diagnosis fell between Alzheimer's or Parkinsons. I always thought that he recieved the wrong diagnosis but figuring out that he had PsP shattered my heart.

    Celebrate every chance you get. As long as he is able let him eat and savor the foods he enjoys. Enjoy as many sunny days as you can. Let him hug you as much as he can. Make all the important decisions now while he can talk.

    As for you take care of yourself. Patience is key. Allow yourself to laugh, cry and be even angry but most of all love him.

    Stay strong my friend your dad will need you, your family will need you in the years to come.

  • Thank you so much Jessy for the thoughtful reply. I'm sorry you lost your dear dad, and sorry it was to this monster named PSP. It's amazing you out-did the doctors in diagnosing! I was the same, but the 2nd neuro Daddy saw didn't need anyone to tell him it was PSP. It's scary to think we laypeople are better able to discover this dx than the experts you know? And I know how you felt as you researched and learned about psp because, omg me too, read then cry then read then cry, for many hours, your "heart shattering" is a perfect description.

    You said let him hug me while he can. I noticed recently I leaned in and hugged and he didn't really hug back although it was a quick hug and I want to pretend it was my imagination or any other excuse. If I remember, it was a hello hug and he somewhat hugged me back when I said bye that day.

    His wife, who's 2 yrs my junior, is the decision maker. She wants him to remain doing all things he's capable of; he can walk but he falls very often. I've been telling her for several months I think he needs to stay in a wheelchair or something similar except when he's accompanied by someone who can help prevent his falls (which is easy because when I feel him slowly start to lean/fall backwards all I do is gently push his back into upright position and it makes the fall stop in it's tracks). I hope that made sense it was hard to explain. So, I understand his wife's wishes and it's most likely his wishes too but I don't want a fall to be what kills him, that seems worse and negligent. BUT it's not my decision. Daddy loves his wife and she loves him. I worry about it a lot though.

    Your advice reminded me of when I saw Daddy last wk. He still moves his eyes in a normal way, still has full use of the eye muscles except for he's unable to look up without moving his head up. My (new) husband and me were visiting Daddy and his wife and throughout the visit I could feel and see Daddy staring at me, even as he responded to others in the conversation he seldom took his eyes off me.. as if he was trying to memorize my face, like he was knowing, now that he's been diagnosed with psp, knowing he's going to miss me, me his firstborn and the only 1of 3 grown kids who's been in his life every day of my life. My child is the only grandchild he got to be granddaddy for, I know my dad loves me, I hope he's not worrying about me and how I'll cope with becoming an orphan when the time comes. It was so sad to see him FEELING his upcoming losses as his disease progresses. There's an underlying feeling among our family of a sadness too immense to face all at once.

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